Friends, meet Jessica. We met over 15 years ago as teenagers, bent on changing the world for the better. Over the years, we have remained dear friends and are happy to have sons just a year apart. Last year, Jessica’s youngest son, Simon, underwent a long process of therapy and testing which finally culminated in an autism diagnosis. I asked her to share Simon’s story here. She graciously complied. In a conversation last week she said, “Could you imagine someone telling us all we would encounter now, 15 years ago? We wouldn’t want to even open our eyes to the future. Yet here we are and we are thriving!” And that is why I wanted her to share. Life keeps going. We are stronger and braver and bigger than our diagnosis, disease, and dysfunction. We have access to hope and healing, even if we have no cure (yet). I’m proud to call this woman a friend.

~Carrie

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Its been close to four months now since D-Day: the day we received the package. A package full of the numbers, paragraphs and codes. The package that labeled my dear son Simon as a boy who was autistic.

I was expecting this, but I was not prepared for the avalanche of emotion that followed, seeing it all in black and white on crisp smelling paper. The heavy blue folder filled with advice on teeth brushing, sensory processing, oh and a list of lawyers to contact should our school district not be cooperative.

What is NOT in the big blue folder is how to handle your relationships. How to talk to people you know as well as strangers about your sons neurological differences. Nor was there a guide titled “Emotionally Processing Your child’s Diagnosis and Letting Others Know How They Can Be There For You”.

One can find a million articles on autism and plenty of them start with the “37 Things You Should Never Say to a Parent of an Autistic Chilld”. I struggle with these articles, not because the content isn’t true, because it leaves people feeling paralyzed and fearing they will say the ‘wrong’ thing. So, they either avoid the topic all together in order to avoid saying anything hurtful or, perhaps, say nothing at all.

After doing a bit of self care in the last few weeks, I was truly blown away by some of the truths in Brené Brown’s research on vulnerability and especially, how Empathy helps propel us into relationship and away from shame.

With much of this truth, in addition to realizing how I personally process grief, I can look back and tell you exactly what I needed in this time. I needed a cozy, safe space where nothing I said, or felt, was perceived as wrong and held against me. A space where I could scream, freak out, ask “why”, followed by more crying. In this space, the nights would feel long and dark and alone. This space is grief. It is real and evolves each and every day. Some days laughter comes back for a moment only to be followed by more tears. Eventually, the tears flow less and less frequently.

“To every person walking through a major life-changing situation, you need to allow this space in your life to exist.”

To everyone else who is watching from the outside looking in, you need to simply choose to sit in that space with that family for a moment. There is no need to fill up this space with empty works. Simply let them know that they are never alone. It can be liberating to acknowledge that nothing you can say verbally will change the grief and trauma they are experiencing. Instead of filling space with words, YOU simply hold the space and share it with them.

On our way home from the Cleveland Clinic with that big blue folder on my lap, my husband and I cried and remained quiet without any music playing as we drove. We let the silence and sound of our tears be our song. We pulled into the driveway to find our fantastic neighbors in the driveway. They knew the diagnosis was possibly coming that day, and not even a minute out of the car they were there with open arms and tears to match ours. They listened to the few words I could utter and instead of filling the air with ‘I’m sure it will be fine….or my nephew is autistic and doing great…’ They chose to inhabit the space with us and be in it too.

An hour or so later, we’re trying to just get back to our day and a friend had told me she wanted to bring something by. Truth be told, I wasn’t up for any visitors but something in me also really wanted her there. I knew she was coming clear across town and she pulled in the driveway and when our eyes met, it was like she understood what we had just underwent. Her hug was compassionate and gracious. She also did not fill the air with ‘Gods got it under control….everything will be OK…’ because she wasn’t actually certain of anything in that moment. What she DID do was hand me a six pack of beer for Joel…fruit snacks for my kids and flowers for me. She also handed me a card and it wasn’t filled with words of empty flattery or ‘Only special Moms get special kids…’ – what it was filled with was ‘You are not alone. We love you.’ She joined me in my space. She brought a little light in.

I could go on about the beautiful conversations, hugs and acts of kindness sent our way upon, during and before Simon’s diagnosis. What I am most grateful for is those who chose to sit with us, look us in the eye, wipe our tears and cry a few of their own. If you’re unsure on how to be there for a friend who is going through something you do not fully understand, just go and be with them or practically love on them. It is as simple and dropping off a coffee or a little bouquet of flowers and a hug. Never under estimate the power of a hug.

Jessica and Family

In four months, we may have a gained a diagnosis that will likely effect Simon forever. We have also gained a support system of Grandparents, teachers, therapists, and a new found surge of power within my husband and myself. This gives us courage on hard days and helps us see the progress. Even progress many would regard as trivial, is a big deal for Simon. Simon is growing, learning, and understanding more of his world every day. Ultimately we are so grateful to all who have helped us and are still helping us process this new way of life.

–

Proud Mother of three fantastic sons and one exceptional Simon,
Jessica

Now, I have to be very honest with you. (What, like I would lie to you otherwise?! Being (too) honest is part of the fun.) I’m not a huge fan of pumpkin. I’m really not a huge fan of pumpkin spice. I find that I’m really happy with one gluten-free pumpkin treat a year. I’ll eat the pumpkin pie if that’s my only option at Thanksgiving. I’ll throw pumpkin cheesecake a bone, too, because that is legitimately the best thing about Fall.

But pumpkin flavored soda or pumpkin spice toothpaste or any other number of Things That Should Never Be Pumpkin are just not doing any of us any favors. Even so, I get it. It’s a craze. It’s fun. And people enjoy the feelings of Fall, and all things associated with this beautiful season. Even if it’s still 90 degrees most days, I GET IT.

So, I want you to have as much fall as you can handle. Baby Zeus knows we will all struggle with sad winter feelings come January, which is why I’ve created lots of pumpkin-y things in my kitchen this month. Even though it’s been 90 degrees here in the PNW all September and in the 80’s in October, and we don’t have central air conditioning and I don’t like pumpkin much. It’s okay. That run-on sentence made me feel better, just like pumpkin treats make you feel better.

Also, I’m pretty lazy when it comes to tasty desserts so I endeavor to spend as little time in the kitchen as possible. This only means GOOD THINGS for you, my friends. Easy, mind-blowingly good things.

Add baking soda, baking powder, salt and cinnamon. Combine thoroughly. (You can use a mixer, but I prefer using a sturdy spatula.)

Fold in chocolate chips.

Spoon batter into a greased bread pan. (I prefer to split it up between 2-3 small loaf pans.)

Bake at 325 degrees for 45-65 minutes, depending on your oven and size of pans.

Remove from oven and transfer to a baking rack to cool for 30 minutes before removing from pan. The cooler the bread, the better removal will go. Because there is no gluten, it might crumble if removed too soon.

So, let’s have fun with this, okay? Mix it up. Change out the chocolate chips.

A few weeks ago, our local news station asked our family to do a news segment on FPIES. We talk about FPIES almost weekly here in an effort to raise awareness around food allergies, and I’m all about raising awareness wherever and whenever I can. So, of course we said yes.

I love the story, I love how well they captured the sweetness of my boy, his gentle, joyful spirit, and most of all his interaction with his dad. The news got about 85% of the story right, and I’m grateful for that. But they missed a few details, and one major detail that I want to express:

Echo’s illness changed everything.

From the ashes of that first year, a new life was born. I don’t mean a human life, (although we were terrified of losing our baby for the first 18 months of his life). But this. This work, this site, this whole idea was formed from the grief.

Echo, two days old and fighting for his life after a stroke.

In the summer of 2014, my long-time friend, Jessica, asked me to write our story for The Leaky Boob. I was in the middle of dealing with massive PTSD, chronic mastitis from exclusively pumping milk from boobs that just wanted to quit, a crumbling marriage, and figuring out a way to keep our son alive and thriving in the midst of an illness nobody, even specialists, know much about. He had three “safe” foods at the time: TED breastmilk (wherein I was limited to 12 foods at one point in time), coconut oil, and spinach. Nightmares of feeding tubes and bankruptcy and divorce tormented my sleep, while emotional paralysis, physical pain, and extreme anxiety plagued me during the day.

Echo’s second FPIES vomit-to-shock reaction when he was 8 months old.

I said yes to telling our story. Beyond the fear and the trauma, I knew other families were dealing with the same issues. They were dealing with the despair, discouragement, and constant barely-subdued terror that their child might not make it. And what if their kid does make it? What kind of life and wounds will this struggle indelibly imprint their little bodies and spirits with? I started three drafts, scrapped them all, and then Echo had a vomit reaction to green beans in the middle of it all. And that was it. The impetus I needed to get it all out in real time.

This season. Trying to keep it all together and almost losing each other in the process.

Telling our story gave me access to the power I needed to find my way through, even though I never quite knew the next step until I took it. It gave me just enough Brave to inch ahead of my Scared, and continues to fuel the heart of this little corner of the Internet where I believe Everyone deserves a seat at this table.

Thank you for being a part of this community.

Thank you for continuing to give us, and other families, a voice.

Thank you for sharing posts that are relevant to you with people you love.

Thank you for enjoying the food and laughter and tears and gathering here to have a human experience. This doesn’t happen without you.

Thank you.

Love,
Carrie, Lance, and Echo

“Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. They come together and they fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.”

Well, not me. Especially not when it comes to food. When you have a super special custom eater for a toddler and you can’t handle grains, things get a little dicy.

So, I want to make easy things. And if it’s healthy, even better. Because you know what should be easy? Eating. In this day and age, eating should be the easiest thing we do. So, I’m on a campaign to make easy, healthy food that doesn’t require magic or rare ingredients from exotic places like Whole Foods. Just real food, you guys. Foods that nourish and feed your belly and give our bodies energy and the builidng blocks it needs to function well.

I’m starting in the easiest way possible: Frozen vegetables, with a side of canned coconut milk and a bit of hot curry powder.

Ingredients:

1 12 bag of frozen vegetables (I like cauliflower, or something with cauliflower in it because of texture)

1/2 can full fat coconut milk

1 Tbsp (more for spicy, less for not) hot curry powder

1 tsp salt

1/2 tsp pepper

Instructions:

In a medium or small saucepan, dump the bag of frozen veggies, coconut milk, and spices. Heat on medium heat for 20 minutes, stirring occasionally. Cook longer if you want to saturate the veggies with the curry flavor.

Eat it.

Optional edit: You can pour this over rice or quinoa. This feeds one person in my house without the rice, and sometimes even with the rice because when it comes to veggies, we don’t edit ourselves. I also like to sprinkle some fresh chopped cilantro on top of it for a bright contrast to the creamy deliciousness of the curry.

It’s back to school time. I heard the internet’s collective cheer as parents and children started a new school year, and then the following week grumble as new clothes lost their shimmer and the reality of the next nine months starts to settle in like a fog.

With every new school year comes an increasing debate around food allergies. Peanuts, tree nuts, soy, dairy, wheat, avocado, strawberries, eggs, fish, chicken, you name it, someone is allergic to it. (Whatever we are doing as a society with and to our food, it’s beginning to emerge as allergies in our children. But that’s another post.)

My son, E, is one of those allergy kids. In fact, his allergies are so severe, I cannot send him to group childcare or preschool. I want him to have the socialization. I think it’s incredibly important. But his list of allergens is so extensive, group settings with other small children just isn’t safe.

But one day, my kid will have to go to school. He’s outgrowing many of his allergies, and by the time he’s ready for kindergarten, I’m hopeful that he will be completely okay. Chances are slim that wheat and eggs will ever be okay for him, though. And I think peanuts will always pose a problem while he’s young.

So, as the school year pushes into full swing, so does the conversation around eliminating certain foods from our schools. It’s a hot topic this year, and we are all divided. I’m always going to side with the most vulnerable among us, especially because this hits so close to home. This isn’t a debate about anything. This is about caring for children who could die from inhaling PEANUT DUST. Or vomits to shock from a crumb of wheat.

Wash hands after eating. My niece, who is allergic to peanuts, reacts to traces of peanut residue on the shopping cart. My son pukes when he gets a tiny crumb of wheat. Wash hands, okay?

Wipe mouths after eating. If you think your child might put their hands in their mouths after eating, go ahead and wipe their mouths. If you plan on kissing or hugging a kid with food allergies, take this to heart. Your love should not cause pain.

Create a safe zone. Remove shoes before entering a house where children have food allergies. If you have someone over who has food allergies, wipe surfaces down, and give a good sweep or vacuum.

Don’t mix food with toys. Don’t allow food to be in the same space as toys. Contact reactions are real, and they’re scary. Kids eat in a designated area, kids play in designated area and wash hands after eating, before playing.

Consider changing your routine. If you or your child eats peanut butter or wheat bread at home before school, consider eating first, then washing hands and face, brushing teeth, and then changing clothes to minimize contact.

Take allergies seriously. Yep, food allergies are a total pain in the peanuts. I get it. But you know what’s more painful? People (and specifically children who are too young to fully advocate for themselves) dying from a speck of peanut dust they inhaled that could have easily been prevented. Why did they die a needless death? Because you wrote the mom off as crazy. And speaking of crazy…

Acknowledge the crazy. Parents of children with food allergies are totally crazypants. I’m raising my hand here because it’s true. But imagine the entire world was full of poison that could kill your child at any given moment and the only thing standing between death (or a trip to the ER) and your kid is YOU. All the time. You would be crazy, too. Hug that frazzled mom next time you see her.

Skip food crafts. Macaroni art or jewelry making? Use toothpicks or beads. I’ll buy some for your classroom, and I’m sure every food allergy parent would gladly buy the supplies.

Talk to your kids about food allergies. Your children are soaking up every attitude you have, more than every word you say. The words are still important, though. Talk to them about the importance of keeping each other safe and discuss ways you can work together to keep their friends safe.

Become an advocate. Be a safe harbor for these kids. Advocate for their safety, just as you would if it was your child in danger. Learn how to use an Epi pen. Learn CPR and brush up on food handling safety. Be a vocal supporter in the PTA, support separate eating areas and safe classroom policies. Give Crazypants Mom and Dad a hug and a bottle of wine when you see them.

Every child deserves to feel and be safe in our schools. You can help make that happen. Now, go forth and switch your peanut butter sammies to sunbutter and try to keep your sanity this school year. And for the love of Zeus, STOP MINIMIZING ALLERGIES. It’s harmful and directly hurts the children in your community.

Hi! I’m Carrie.

Several years ago, I embarked on a journey to hold my life with empowered wellness. It started with community, both online and in real life. It breathed and it grew and it spilled over into my work, my marriage, my family, and brought forth a remarkable son with special challenges. It's not perfect, it's a little quirky and sometimes frayed around the edges, but I love this life. And I want to share it with you. More about Carrie

Our Stable Table does not intend to dispense medical advice and should not be considered medical advice or counsel. If you have a question about your health or the health of your child or loved one, please consult your physician. The stories and information here are anecdotal and of personal opinion only and should not be used as a substitute for medical help.